Monday, 16 May 2011

RePost... Only Special People are granted Special Babies... Thanks but I hate the word Special!!

So I thought when i started I better do an Introduction to My Life and My Son as My Way sort of folds into that. You've read a little rant about social networking and a little bit about me starting the Blog but so far you know nothing about My Son, other than the fact that he is Crazy! So here is an introduction to Rhys Lee Baillie, age 8 and how his life has unfolded since his Birth in 2002.

So where to begin, maybe a quick how it came about... So I was 14/15, living with my Dad in Cambridgeshire, an unruly teenager and very, well so I thought, independent. I hated my life, my parents, school... no surprise there, as this is so called 'average teenage behaviour'. I fell into the wrong friendships, even though I already had some amazing friends who were of the 'Good' type, which again is a sign of generic teenage experimental behaviour. Now a days it's rare to find a teen who hasn't been through this at some stage of their pre teen or teen life, which, from what I went through, I think is quite a scary prospect for what our kids will face in years to come... but that's a future rant... I met a boy, who my dad obviously didn't like. He was your stereotypical 'my dads gunna hate you' type, which is no doubt why I went for him. I went a little further off the rails and moved out of my dads house as I had obviously decided I was all grown up. I think I just liked the 'shock factor' at the time. I dropped out of school (a massive mistake) and just partied myself into my 16th year of life. A few weeks after my 16th birthday I found out I was 3 months pregnant... Now that was a 'shock factor' for myself as well as for others. I had been very strict with myself and I took my pill religiously (shockingly), so to me I just couldn't be pregnant... denile didn't help matters. all I kept thinking was, So at 16 I was living in a bedsit with a boy and up the duff, when only a few short years ago I was an innocent academic in all the top sets at school with great prospects... Brilliant, now how to tell my dad?? I know, Let's just not tell him or any of my family... because that was a clever thing to do wasn't it Alice!! I held back from telling my family out of shame and pure fear and by the time they'd found out I was 6 months pregnant. Let's just say it was taken... elegantly by most but the shock of it set in quite quickly. So I tried to get on with it, with some help from friends and family, I moved up North, to Yorkshire where I'd grown up, with his Dad in tow, to be near my Mum. Here I had all my Anti Natal appointments and pregnancy fun. I had Rhys Lee Baillie, 9lb, at Scarborough Hospital, on 28/09/02 at 5.15am and after 21 hours in labour, His Dad, My mum (who works at the hospital as a nurse) & My Best Friend all had time to make it to the birth. My best friend came all the way from Cambridge on the train when she had heard I was in labour and she still made it to see his first breath, Amazing. So after a few cuddles and a good sleep the fun began...

Rhys was born with the biggest hamster cheeks I had ever seen, it was just swelling from labour but it was quite cute. I had had Cabbage Patch dolls as a child and was insistent that he looked like one (in a nice way). I was in love. He was gorgeous, massive, but gorgeous. But the doctors kept looking at him and taking him away for tests 'on his cheeks', I was quite happy for him to be tested as long as he was OK. I started getting a little sceptical of the 'doing tests on his cheeks' line as I started glancing around the room at the other new born babies... they were all scrawny and skinny looking but they weren't getting any attention from the doctors, I thought it was a bit odd that Rhys was so important. The Pedeatrition came in to the ward to see me when my mum was still there... My heart sank as he said 'I need to see you both in the morning, your mum can be there if you want her to be' he looked at her with a knowing look which I noticed straight away. When he left I asked my mum 'Is there something wrong with him?' she replied 'would it matter if there was?' in which I answered quite quickly 'no' she left it at that but it didn't stop me worrying all night.
So just over 24hrs after Rhys was born, both me and his dad were met by my mum at the Peadiatric ward. I was petrified at what I was going to hear. I knew there was something, as my mums words had swilled around my head all night 'would it matter if there was?' I knew she wouldn't have said that if there wasn't anything wrong. I was almost prepared for what he was going to say, but not, if you understand what I mean. He started saying all sorts of facts and figures, of which I don't remember but I do know it felt like he was talking for hours... He used the word 'Special' over and over and over... until the midwife, who was also in the room, told him to get on with it (which was quite funny). He eventually said the words Down Syndrome... I was already crying because of the tension in the room but I just stared blankly at him and carried on crying. His dad handled it a lot better than me, he was obviously upset but wasn't crying. I, on the other hand, was a mess. He then went on to say 'there is always the option of adoption' in which i screamed at him 'no way, how dare you' I now know he had to say it as part of his job but at the time I was fuming at the thought of giving up my tiny, helpless baby. My mum, who never cries, was tearing up and that made me worse. She knew what was coming. She had in fact spotted the signs of Downs herself and pointed them out to the midwives on the ward, in a matter of minutes after he was born. She has worked with and around Downs all of her working life and from as far back as I remember. She had held him for the first time and whilst looking at his tiny little hands had noticed his 'single crease' which is one of the main signs of Downs. If you cup your hands and look at your palm, you will notice you have 2 creases with a gap in the middle, people with Down Syndrome usually only have 1 reaching from one side to the other with no gaps. She had made the midwives aware of this and the testing began from there. I must admit I struggled a lot with the diagnosis but I do think that my history with my mum working with Downs adults was a help as it wasn't a completely new thing for me. I was in hospital for quite awhile after giving birth as they needed to keep an eye on Rhys' heart etc and do a few more tests. My family and his Dads family had been told by my mum about his Downs via the phone and so they all made the journey to Scarborough to see us... and most importantly bring me McDonalds! I was very happy with my McDonalds it was the first thing I'd smiled at since the diagnosis! It was emotional having to talk to my family about the Downs but they were all very supportive. I know that each of them had their own worries and they did all their emotional stuff away from me, which I love them for. I didn't want to leave the hospital from fear of failure but I also just wanted to escape as I was bored of my bed. I was so confused but because I am the most stubborn person on earth I pretended all was fine... It defiantly wasn't but I knew I just had to get on with it. I must add, the staff at Scarborough Hospital were amazing with me during my stay and I would like to thank them all again for making me feel so comfy with asking all my silly questions on babies and downs and dealing with my crying all those years ago. 

So we were home.... And I have no recollection of anything that happened or do I remember anything about everyday life. I remember there were arguments and that Rhys was a happy and quiet baby. I remember the Genetic specialist coming out and doing blood tests on all of us including my mum. I remember the results and the fact that Rhys' downs was Translocational Down Syndrome a genetic form stemming from MY fathers side of the family, as my mum wasn't a carrier. I remember the lady telling me that in the future I had a 1 in 5 chance of having another Downs baby, which is stupidly high for my age. I remember we moved house a lot... and I remember the friends I made along the way, Friends I still hold responsible for me being where I am today... But that's about it. I have what the doctor says is a mix between Post Traumatic Stress, Post Natal Depression and My young age and has left me with little memories of the 1st year of his life and little from the 2nd,3rd and 4th too. This is one of the most stressful things for a mother, not to remember the 1st's of your babies life... but the brain has held these memories back for a good reason I believe and with help from Jim Tubbs Galley My hynotherapist I will get a few more memories back and when I do you'll be the first to know!


Right so lets get on with what I do remember and the present day... I'll do it in sections to make it easier!

Health: Rhys has Down Syndrome that much you've got so far... he has been so lucky with his Health. He has had the all clear for his heart and this is usually the most common health problem in Downs. He gets Ill a lot during the winter due to a low immune system causing a lot of time off school due to illness. He has a Bowel problem in which he struggles with constipation due to a lazy bowel... Lazy owner of the Bowel doesn't help either! lol. He struggles with disturbed sleep, in which I found out recently is normal in Downs and is currently being researched by the bigwigs. He had Sleep apnea very young and after a few operations he was cleared... well fingers crossed anyway. Rhys struggles with his walking due to lack of muscle tone which is also generic in Downs. He can't walk long distances without stopping for a rest, also he struggles with the pain caused by his swollen Bowel so this disturbs his walking too. Recently he has been complaining about his knees too. I have noticed that he falls over a lot and that he often buckles after long periods of playing or walking. Which has also been picked up on by school after several notes home from falls. We are waiting to be referred back to the Paediatrician at the moment.
Other than that he's fine at the moment... and I thank god everyday that he is as healthy as he is... lots of small problems that can be dealt with are easier than one big problem that can't be solved.

Fame: He meets more celebs than a TV host. He starred in Take a Break magazine at the age of 3 telling the story of a Young mum and Downs which, along with his massive smile and personality, gained him a local fame status. He has a very eventful life, He'd been on TV by the age of 5 starring on 'Celebrity Scissor Hands' having his Hair cut (badly) into a Mohawk by Tamara Beckwith, in which he raised £350+ for children in need. Can't help but think there is more to come on the Fame stakes...

Friends: He has many friends old and new, far and wide. He has more adult friends than I do!!! He has friends all around the UK and likes to visit them often. He loves his friends in Bridlington but we don't get to see them much but he still loves them.

Football: He has had a season ticket for Reading FC since the age of 4 and is on first name basis with John Madejski. He is very sporty and active doing a different sport after school everyday claiming to be the next 'Star'.

Loves: He has taken a liking to everyone of my Blonde friends and is a self proclaimed tart! He loves his clothes often telling me 'No' when I try and dress him in a mismatching outfit. He loves to be in front of the camera and is always craving the attention of others whether it's by singing, dancing or making us laugh. He wants to be a star... I have no doubt it will happen!


Music: He attended his first music festival at 4 when he came along to Reading Festival to watch one of his favourite bands the The Fratellis (where he was stolen by a friend and put on his shoulders and paraded to the front of the crowd whilst high fiving everyone on the way past... scared the crap out of me! He loved it!)  He loves anything Rock n Roll or Indie and loves his drum kit and his guitar. He has taken a huge liking to Dave Grohl and all things Foo Fighters. He loves to break dance to everything.. even slow songs... I did tell you he was odd!!

Wrestling: He is obsessed with Randy Orton and John Cena. We took him to the O2 arena to see WWE and I have never seen him so happy. He dressed up in his wrestling muscle man outfit and battled the London rush hour to get to his beloved WWE. He watches it whenever he isn't watching football which makes it about 50:50 to be honest.


Computers: I used to think kids on computers was really sad... and then they invented the Wii! and I haven't found a better way of developing Rhys' hand eye coordination. He even loves the WII fit in which he is teaching himself Yoga... at 8 strange kid. Hats off to Nintendo!!




School: Another hats off to Rhys' school. Rhys attends a main stream school in Reading and has only been there since November '11 but has developed himself in leaps and bounds! Rhys has been to 2 other schools the 1st was... well just AWFUL and the 2nd was a great improvement on the 1st with some amazing people and ideas but i must admit this school is better equipped for Rhys' needs. He loves school and has started to write his words with real letters... helpful!! And speak much more clearly due to the concentration on his speech at school and at home. The teachers and children have been so welcoming to him. His teaching assistant Miss Goddard is so lovely and is amazing with Rhys and I thank her greatly for all of her time and effort in developing my stubborn, lazy child in to a school lover!

So there is a quick read through of Rhys and his Life but I am pretty sure he has a lot more to offer and I'm sure you'll find out all about it over time.

11 comments:

  1. AWWWWWWWWWWW I love you both soooo much . Keep writing <3 You'll be a fantastic author someday <3 Love your cousin in Canada xx

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  2. hello, came across your blog through bmb. i wouldnt use the word special, i'd say you have one helluva a lil cool dude!! festivals, drums, footballers..wow!! he sounds like fun! :)
    xoxo

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  3. I nearly cried reading that. You're an incredible Mum and little Rhys is gorgeous (I atually think his Tamara Beckwith hair is cool!!) You're an inspiration xx

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  4. Thank You guy's your comments mean a lot to me. I hope you enjoy reading future posts as much xx

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  5. Hi lovely. I cannot imagine how hard Rhys's diagnosis must have been for you. You are totally amazing, and I agree with Nikki, Rhys is one very cool little dude! xx

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  6. your a beautiful amazing inspirational person alice, i love u so much. rhys is gorgeous, and i miss u. :'( xxxx

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  7. I have little recollection of my first year with Ché who is 6 now....it is all a bit of a blur so it is good to hear that it's not only me :)
    Wonderfully honest writing...thank you....Rhys is a great little man :)

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  8. Such a beautiful post and such a gorgeous little man. You are both amazing and inspirational. Xxx

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  9. Love this. Thanks for sharing, Rhys is a star!

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  10. Found you through Tots 100.. a beautiful post. You and Rhys are very lucky to have each other - he is a diamond! xxx

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  11. cakesphotoslife (Angie)28 August 2013 at 19:03

    I love this boy so much, he left a mark on my heart the moment we met. I walked away from a drs clinic nearly 5yrs ago looking at the palms of my heart after being told my little boy is missing a head line, the day we were told he had ASD, you may have been young but you are one amazing lady and I'm privileged to know you x

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